tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I am reacting to absolutely everything I put in my mouth at this point with burning face/mouth/eyes amongst other things.
I don't know what to eat since I'm so limited and still meet nutritional needs.
What should I do? I need to hear from those of you who have been in this situation and were effectively able to manage it somehow b/c I've yet to figure out how to deal with this. I just had a scarey episode and popped a benadryl and then sat with the epipen by my side till the benadryl kicked in.
Does anyone know if Wobenzy helps with leaky gut?
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
up
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
SuperCritical Omega 7 by New Chapter - made from Sea Buckthorne. It rebuilds the mucous membranes and the lining of the GI tract.
Take 2 20 minutes before a meal for a few days - then cut it to 1 before lunch and 1 before dinner.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Some treatments are possible. I would do allergy dissentization with homeopathy or anything that helps for being able to eat again.
Parallel to it, you need to rebuild the gut lining. Killing infections in the gut is a must as they cause it. Look into parasites and candida too, as they cause leaky gut.
enzymes will help if you are not allergic to it.
Total allergy free diet is a must too, if you can (some can't as they have MCS). If you still are able to eat something (like rice, for example), avoid all other foods when possible as they increase inflammation and consequently increase the leaky gut syndrome.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Well, first let me say, I'm no doctor and this is not intended to be medical advice. Find a doctor, go to the doctor.
That said....your allergies can be problematic for a gazillion reasons, all of which would be difficult even for a trained professional to figure out from the arm chair of her/his living room. However, one idea might be to start somewhere easy.
I'd say start with the Paleo diet, but my guess is you have candida involved, so I might suggest you research a no-carb diet, like atkins, or alternatively, an 80-10-10 diet, which consists entirely on fruits and vegetables. The 80/10/10 is a fascinating concept, flies in the face of conventional treatments, and I wish I had learned about it 10 years ago.
I would say, start investigating from either of those two standpoints. Atkins is a short term fix (in my humble opinion), 80/10/10 is more difficult, more sustainable and better for you.
Best Wishes
Posts: 261 | From Washington | Registered: Oct 2002
| IP: Logged |
posted
One thing doctors might miss is mercury or heavy metal toxicity which for yeast is a common complication. For more info go to Yahoo group frequent-dose-chelation.
Posts: 705 | From WA state | Registered: Jul 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Was about to start working on yeast and got sidetracked by an ear infection and am now on abx for the first time in about a year-the last thing I needed to happen with the yeast issues.
Can't do diflucan or nystatin b/c I still haven't recovered from my last 30 day course of diflucan in February! My bilirubin has been elevated ever since. Nystatin makes my head spin something awful to the point of near vomiting.
So LLMD was to start me on a 2 week candida cleanse followed by a course of minocycline to address klebsiella which has been an issue in the past and still suspected.
In the interim though I'm reacting to most foods including gluten, milk, eggs, nuts, peanuts, shellfish, turkey, tuna, coconut, garlic, potatoes, corn, nightshades, apples, carrots, oats and more.
That doesn't leave many other foods especially since the foods I don't react to need to be rotated every 4-5 days. Not enough foods left to do that.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
lymenotlite, I did test positive for metals. Mercury borderline high, lead is high. Started CORE for KPU. LLMD said I'll start dumping heavy metals in a few weeks at which point we will have to chelate.
noodlydoo, LLMD did mention Paleo Diet but it is still very difficult with all my allergies. I guess there isn't much advice anyone can offer in that department. It is what it is. Will check out 80-10-10 diet.
Brussels, I believe we will be addressing parasites sooner rather than later. He said something about the minocycline I'll be on for the klebsiella will also address some sort of protozoa? I dunno. Oh, and I do have MCS. What do you mean by some can't do totally allergy free with MCS? Tried allergy desensitization, at least I think that's what it was, and I reacted to the therapy as well. I am incredibly sensitive.
Julie, I will look into that supplement and run it by my LLMD.
Does anyone know if because my delayed allergies have now turned into immediate am I stuck with them for life?
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
posted
Tickled, while I was on a very strict allergy diet my LLMD put me on a medical food-grade supplement based on rice protein. It has a bunch of stuff for helping rebuild the gut lining. It literally saved my life earlier this year.
As far as if they'll last, I think everyone's different. My cousin developed allergies with lyme and when she was "cured" she is still left with two of them when she says she had about 10. She told me she has friends who had lyme whose allergies disappeared. So who knows. I still have mine.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
sbh93, was the supplement "Ultraclear Plus Ph" by any chance? One of my doctors wanted to put me on that at one point.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
With this therapy addressing dysregulations (we call them allergies) of the information system we eliminated all therapies and literally can eat everything that we wish to eat, touch, etc. Please read it carefully. This method addresses the fact that the autonomic nervous system has gone haywire - out of balance - and especially I turned to be "allergic" to most foods, even heat and cold, totally turning our life upside down.
The major effect was that we no longer were "allergic" to toxic heavy metals and our detoxing really took off. There is little chance of getting well until we are able to release the accumulated toxins, of all kinds, chemicals, etc., and the dysregulations/allergies that we inherited. Now the our immune system is able to respond again as it should have, but couldn't --- who knows why? Possible overload from toxins and infections.
All wheat/grain dysregulations = allergies -- are also eliminated. As are celiac problems, etc. I needed about 16 tiny bottles, which means that it took me about 16 months. However, the major first allergies that were eliminated/corrected to where the body could again respond were the major foods/grains, mucors, and metals. After that all the chemical load is addressed and corrected -- with 200,000 chemicals in our life it takes a while to correct.
Hope you read some on the link. There is also a thread here on Lymenet called "Allergie Immun Germany". I don't have time right now - it's a bit late - to pull it up. It has about 3000 posts of all the people who have done the therapy.
Hope you get better and well real soon.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I too have a very short list of "safe" foods - I have MCS and Sulfite Sensitivity and Gluten Sensitivity and a bunch of other food/environmental Allergies and Intolerances. I have tried sublingual desensitization, NAET (acupuncture-based desensitization), and BioSET - and I got WORSE every time! So stay away from these until you figure out WHY you are developing so many allergies.
In my case, partly it is from Lyme/coinfections messing up my gut, partly it is from genetic variants in my Methylation cycle (causing the MCS and Sulfite Sensitivity) and partly it is genetic predisposition to gluten problems (I have one Celiac gene and believe that I was well on my way to developing full-blown Celiac when I was diagnosed with Gluten Sensitivity and decided to try a Gluten-Free diet).
For the Sulfite issues, I have found help from small amounts of B-Complex (cannot tolerate larger amounts until I can find safe alternatives to what Dr. Yasko's protocol recommends for the variants I have in my methylation panel), Vitamin B12 shots (I don't absorb any oral B12 apparently, even though I do not have Autoimmune Pernicious Anemia), Molybdenum supplements, minerals (esp. zinc, iron, magnesium), and avoidance of sulfites as much as possible.
I hope my tolerance for foods will improve with time, because right now, I can only eat a few foods from an ever-shrinking list (white/brown rice, potato, some dairy, tapioca, blueberries, pears, pumpkin seeds, parsley) with minimal symptoms - too few foods to rotate, and I never found rotating to slow down the development of food allergies for me, anyway. And I know I'm ok with some dairy because and I avoided it for 14 years and STILL had all the same problems as before stopping dairy, and the problems did not get worse when I started eating dairy again after those 14 years dairy-free.
BTW, via EDS screening, there is nothing I can eat without some kind of immune reactivity. My Naturopath says this is because of my immune deficiency - once an inflammatory response starts in my body, I do not have enough regulatory T-Cells to shut down the inflammation and it escalates until I eventually develop sensitization to whatever started the inflammation in the first place.
I feel like I'm rambling, but that's a long way of saying I'm in the same boat as you and am looking at my rapidly shrinking list and wondering when I'll run out of foods completely.
BTW, for those of you who would like to suggest meal replacements for me, please PM me to get a list of things I cannot have in a formula - it's a long list...
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Tickled, yes, it was an Ultraclear but I'm not sure which variety. I'm headed back to the doc soon and am thinking of going back on it because my gut troubles are getting bad again. I'm sure whichever kind the doc recommends for you will be helpful.
It's a lot like baby formula, just so you know (doc hates it when I call it that), but it was filling and gentle and as time went on and I changed my diet the pain lessened. I don't know why my issues are coming back but I'm confident this stuff will help me repair them again and keep the weight from getting too low.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
sbh93,
I was seeing an integrative doctor just for supportive measures right before I started seeing my current LLMD and she suggested the UltraClear but when I mentioned it to my LLMD he said he wouldn't recommend it but I don't understand why. My instincts keep telling me I should have done it months ago when the other doctor suggested it. The whole concept of the UltraClear makes sense to me and my gut (no pun intended) tells me it would help. I'm going to run it by my LLMD again.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
posted
Hmmm, I don't know why a doc would be against it, unless they were afraid you'd try to live off it and end up starving (you can't have only that, it is definitely a supplement). But hey I'm no doc--sure it wouldn't hurt to ask again and find out why the current one doesn't recommend it. There is a lot of stuff in there, maybe he/she knows something in it won't agree with you.
If he or she doesn't want you on it, I would ask for a referral to a nutritionist--someone who knows your issues and could give clear information on what you should eat. It's too much for us to figure out on our own, especially when hurting. We don't want to get worse because we can't feed our bodies right. That's what happened to me and it was scary. And yet I wasn't reacting as severely as you. Good luck and please keep us posted.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I've been trying to figure out what to eat for the last couple of years with things being especially bad and getting worse since Feb. You're right. I do need to see a nutritionist. I emailed my LLMD but probably won't hear back until next week.
Thanks for your help and advice!
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
posted
Tickled, don't give up hope, you will come through on the other side of this.
Our daughter had a terrible case of leaky gut, and was on a very strict & limited rotation diet for about a year. She was even allergic to zucchini and broccoli! It was so tiresome and difficult.
Now she has been adding foods back in very slowly, and doing well.
Yes she did use Wobenzyme among other supplements. Also homeopathics, plus nutritional counseling from the clinic nurse.
She also addressed mercury and a bad case of candida.
Good luck to you!!
Posts: 228 | From Mass. | Registered: Feb 2009
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
James,
Have you seen good results with Wobenzym?
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
James1979
Unregistered
posted
tickled - I'm not sure. I was taking so much stuff, it's difficult to say what did what.
IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Yeah, that's the problem with this stinkin' disease.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
James1979
Unregistered
posted
Has anyone here ever heard of "leaky brain"?
P.S. I'm NOT joking! Seriously. I really wanna know.
P.P.S. I'M BEING SERIOUS!! Sheesh. You guys never believe me.
IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Um, yes kind of. Google Todd Lepine and listen to his talk on his website.
I have limited access to power/internet/phone service and such as I live in MA and we have been without everything since the storm on Saturday. No telling when utilities will be restored. Have to travel to family to shower and such.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
I have read about cell phone radiation disrupting the blood brain barrier, causing it to let proteins through that it normally doesn't. I guess that could be called leaky brain but I don't know if that's what you're talking about.
I googled it quickly, and found this paper which is quite detailed, but at least it is more than a passing internet statement "cell phones cause the blood brain barrier to be disrupted"....... where you read it and never know where it came from.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I have issues in my right eye/ear/right side of head in general and my brain lesions are on my right side and that's the side I hold my cell phone on.
LLMD said his first guess on that is heavy metals and I'm theorizing further that yeast and metals are related and I believe EMF's come into play somehow in that area as well.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
posted
For years I have used CANDEX for yeast with very good results. It has become one of my most important supplements. A while ago I thought I could discontinue it, but developed a yeast infection and went back on again. No obvious problems since. I does not work systemic, but neither does Nystatin. Candex won`t take you all the way, but it`s a start. http://www.vitacost.com/Pure-Essence-Labs-Candex-Yeast-Management-System-120-Vegetarian-Capsules
I also have been suffering from a wide array of food intolerances for about 10 years. What I figured out for myself is that all the foods that are giving me problems have one thing in common: they are high in histamine. So I went on a low histamine diet, replaced my fish oil with Omega XL, and got a DAO supplement. Things went well until last year my LLMD had the idea to try Lariam, which supposedly triggered a Mastocytosis. With my body suddenly being swamped with histamine things completely ran so out of control that I had to go off all abx. Now I`m using Gastrochrom on top of diet and DAO. I have the burning skin you describe, itching and stinging, and on bad days my bladder is very painful. While doing some research on my problem last week I met A CFS patient online who "accidentally" got rid of her food intolerance issues by addressing her adrenal fatigue. Since I know my adrenals are not working properly (did a saliva test), I`m going to address that issue next. I also revised my supplement protocol again, switched Folic acid with methyl folate, reduced Zn, and made sure all my B 12 is the methyl kind. On top of that I will try everything get my liver up to speed to better metabolize histamine.
[ 11-03-2011, 10:58 AM: Message edited by: Kathi ]
Posts: 210 | From VA | Registered: Mar 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic